There are so many things that come to mind so I'm going to type as they pop up...it may seemed jumbled and are in no particular order.
As far as the diagnosis, I have no experience with a prenatal diagnosis. We received ours a few hours after Hailey's birth. We were very fortunate in that we had a fantastic neonatologist (it almost made up for the horrid OB that delivered Hailey). I frequently repeat the advice he gave us. "Take all of this one step at a time. Take each hurdle as it comes and don't worry about the next one until it comes. He/she is your child first. Feed him/her, change them and love them. Everything else will work itself out." It is actually good advice for any new parent.
Be prepared to be bombarded with information. Information from everyone...early intervention, local Down syndrome association, statistics and facts about other conditions that children with Down syndrome can get or may have. Take a deep breathe and just focus on what you can handle at the time. Some people are research fanatics. They feel that knowledge is power and they need all the information they can get their hands on. Some people need to take it a day at a time. I personally read a book that listed every possible disease, illness or condition that Hailey could have have in conjunction with Down syndrome. I cried for days. I then took the book to the recycle bin and dumped it. I could not even pass it along to another family. No one gives parents with typical children a book that lists everything that "could" go wrong with their child.
Enjoy your baby! Snuggle with your child and take in all the new baby smells. There is no snuggle like one from a baby with Ds...or a toddler with Ds :-)
Your child will be greeted with mixed emotions. Some people will apologize when they find out your child has Down syndrome. Don't worry about it. Tell them you are not sorry and move on. Some of it comes from lack of information and some people truly do not know how to respond. Some people will cry crocodile tears and smile. They probably have a connection to Down syndrome...a sibling, a cousin, a friends relative, etc. They see the beauty. Some will say congratulations and smile as they go on their way. Some will not respond at all. Don't worry about them either.
Take care of yourself. You will throw yourself into caring for your child (as you would with any child), but take a few minutes to yourself. A nap, get a manicure, go for a run or walk, read a magazine...whatever makes you happy will help you stay sane and be a better parent!
The last big advice I have to give, I just gave to a friend of mine last week who has a little girl who is 16 months old (who is one of the cutest little girls I have ever seen!). She told me that she did not know who to listen to. Sometimes there is conflicting information. One specialist recommends this and another one recommends that. Some therapists push for weekly or even twice a week therapy and some will tell you that once every two weeks is adequate. My advice is this....you are the parent. You know your child better than anyone else does. You know what your child can handle and what is too much. Follow your gut instincts. Generally, they are right. Also remember that your child is part of a family unit. If therapy 5 days a week doesn't fit with the rest of the family or it causes issues with your other child or it exhausts you, then don't do it. Each person has a role in your family and you have to do what works for your family as a whole. While my middle child thinks he needs to play select soccer, select baseball, that he should try out for football and play basketball....he simply can't. He is one of three children and we can't devote the financial resources or the time for him to do that. It isn't fair to his brother, his sister or his parents!
The best thing I can tell a new parent of a child with Ds is...congratulations! It isn't the journey we all would choose, but I love my tour guide and you will be crazy in love with yours, too!!!
|Hailey was not happy at the eye doctor last week.|
|But thankfully, she never stays mad for very long!|